Le Monde Diplomatique January 2001


Talk out, fight back


Aids has exacted a terrible toll over the past 20 years: 19m dead and 35m people with HIV. In the North multitherapies have reduced mortality though the treatment does not always keep the disease at bay long-term. And it costs a lot. Too much for the South, it was claimed, until the world conference in Durban in July 2000. There, associations pointed to the responsibilities of pharmaceutical multinationals and helped loosen the stranglehold stopping companies producing cheaply the generic molecules involved. But shaky regimes, war, migration and prostitution all contribute to the continued growth of  Aids.





                              The great epidemics have always been seen as coming from elsewhere, and

                              Aids has been no different. Before Africa came to be seen as its cradle and

                              some countries demanded a test for HIV (human immunodeficiency virus)

                              before they would grant entry visas, the United States had pointed the finger

                              at Haitians as a particularly exposed group. In the third world, which for a

                              time denied its existence, Aids has been represented in various ways - as a

                              virus that had escaped from laboratories in America and was going to

                              decimate the native populations, and then, as the drama grew, as a scourge

                              afflicting specifically sub-Saharan Africa. For a number of years India, too,

                              hushed up the HIV threat.


                              After the explosion of Aids in the US the disease was looked for, and found,

                              all over the world. The situation was most tragic of all in sub-Saharan Africa,

                              where it affected equal numbers of men and women; in urban areas more than

                              10% were seropositive in the 15-49 age-group which includes economically

                              and sexually active adults (1). There were almost none among older people,

                              proof that the virus had spread in recent years.


                              Thunderstruck, the international community launched a concerted aid effort in

                              1985. Under the aegis of the World Health Organisation (WHO), national

                              Aids control programmes were set up to coordinate all activities connected

                              with the disease in each country. Because of the urgency with which this was

                              done, however, these programmes are in most cases not part of the general

                              health administration, but have been attached directly to health ministries. As a

                              result, the action they take is seldom integrated into national systems for

                              delivering health care.


                              At first the work of the national programmes, led by foreign experts, focused

                              on epidemiology (2), on the safety of blood transfusions and on prevention

                              campaigns based on WHO's "information, education and communication"

                              (known as the IEC model), which had been geared to circumstances in the

                              western world. Surveys by the national programme centres quickly confirmed

                              that, in Africa and Asia, HIV transmission was essentially heterosexual, and

                              showed that genital infections - which were present everywhere and left

                              untreated - greatly increased the risk of contagion.


                              Prevention campaigns targeted the groups at risk: prostitutes (though not their

                              customers), patients presenting with sexually-transmitted diseases, long-haul

                              truck drivers and, in Asia, drug addicts (3). Among populations with a high

                              level of HIV infection, these moves have not stemmed the progress of the

                              disease. Instead, they have tended to push Aids into the private area of the

                              "shameful diseases" one does not talk about - the very opposite of making

                              everyone aware of the danger.


                              In an international mobilisation of effort, specialists from the North decided

                              the operational goals, gathered data and examined the results. For a long

                              while this led to national bodies staying in the background. They saw the

                              epidemic not as a major public health problem the nation's politicians had to

                              do something about, but as a highly complex medical problem that could not

                              be overcome without outside help.


                              The West's scientific predominance, by taking legitimacy away from the

                              national bodies involved and skewing their professional thinking, in fact

                              encouraged the politicians' vacillation and procrastination.


                              A further hammer-blow, structural reorganisation, forced cutbacks in health

                              budgets. And the continued existence of conditions that can be prevented or

                              cured - malaria, measles, malnutrition, tuberculosis, the diarrhoeal diseases

                              and maternal and infant mortality - made it hard to bring in any reform of the

                              health system that would meet the population's basic needs and still give

                              priority to preventing the spread of HIV and looking after those with Aids (4).


                              Reluctance to talk


                              A strong community-based sector has developed in the countries of the South

                              in health matters; but in an area symbolised by sex and blood, it has not

                              acquired the scope of its counterparts in the North, where pressure groups

                              have had a great influence on their country's health policy. For all the parties

                              that are involved and all the resources that have been poured into information

                              campaigns, and despite the contacts forged between the health professionals

                              and community movements and religious leaders, there is still a reluctance to

                              talk about the subject. This stands in the way of a public debate on the Aids



                              When the scientific community of the rich countries took charge of the health

                              aspect of the fight against Aids in the countries of the South, it was doing so in

                              line with the principles of solidarity in which the West believed. By highlighting

                              the relationship between poverty and the way HIV was transmitted, the

                              epidemiologists shook the certainties of the Unaids "consortium", which takes

                              in the UN agencies and the World Bank. For the intelligentsia in their New

                              York and Geneva offices, responsible for strategies to stem the tide of Aids,

                              the realisation that biomedical means were not, on their own, going to make it

                              possible to beat Aids came as an ordeal - one that at all costs must not be

                              reflected and tragically amplified in the countries of the South. Other factors

                              came to light that let them off the hook: underlying the shortcomings that had

                              been found, there was a lack of understanding of the sexual mores of the

                              populations of the South.


                              A new component of studying and acting on people's behaviour was added to

                              the programmes. There again, local researchers had no choice but to put

                              themselves under the guidance of the expatriates running the projects. Studies

                              like this involve more unforeseens than the biomedical approach. For one

                              thing, one is delving into innermost feelings and urges, and coming up against

                              individual and collective modesties and susceptibilities. And for another, what

                              the social anthropologists discover is often not what politicians and institutional

                              decision-makers like to be told. But is unravelling the many factors -

                              physiological, psychosocial, cultural and economic - that determine sexual

                              mores essential for suggesting behaviour compatible with avoiding HIV

                              infection? The social anthropologists may have forgotten that in the South

                              today's falling birth-rate has not followed large-scale enquiries, but results

                              mainly from access to education and health-care.


                              The research done by Unaids, coupled with the experience of WHO and

                              Unicef in the field of human reproduction, will undoubtedly provide data that

                              will help to show how diverse sexuality is. Can all this information pinpoint the

                              motives that will lead men and women, once warned of the risk of HIV, to

                              change their behaviour and sexual practices? Or will it just lead to pointless

                              arguments that conceal the scale of the social and economic factors standing

                              in the way of changes in behaviour (5)?


                              'Information, education and communication'


                              If we look at how reluctant Westerners are (for all their exposure to the

                              notions of psychoanalysis) to talk about their sex life, we can see the size of

                              the problem of bringing a discussion of sexual relations into the IEC

                              campaigns. These populations already find it hard to take in, understand and

                              discuss the usual messages put over by IEC, marked as they are by a medical

                              rationale. So the emotional factors stirred up by any mention of sexuality may

                              make a real debate within communities about Aids even more unlikely.


                              The greatest explosion of Aids has been in southern Africa. The lack of

                              prevention programmes among the deprived populations led President Thabo

                              Mbeki to convene a conference bringing together a panel of experts to restate

                              the principles for combating Aids in the South (see article by Anatole Ayissi).

                              One may hope that media coverage of the many controversies this has

                              sparked off will break the taboos that have been muffling the voices of the

                              victims, of their families and of those who think that Aids is someone else's

                              business (6).


                              One of the essential conditions for harnessing the efforts of the people in the

                              grip of Aids is their being able to talk openly with those close to them, without

                              fear of reproaches or reprisals. For women, it means being able to protest at

                              the unequal standards applied to men and women (in particular the little say

                              they have in whether to have sex or not). It means condemning the expelling

                              of young girls before they have finished their schooling; pointing out that

                              invoking their rights is still just reciting so many empty words; and complaining

                              that out-of-date schoolbooks still glorify male virility. For the young, it means

                              stopping making fun of the slogan "I won't be an Aids victim" while, for them,

                              the risk from sex is just one among so many others. For those running the

                              national Aids control programmes, it means not looking at the disease just in

                              the way they have been taught, but with their own eyes and from a different

                              angle. Only by speaking out freely and forcefully will initiatives get going that

                              fit in with the way people live their lives; and these initiatives will do a great

                              deal more for the anti-Aids strategy than using the new antiretroviral drugs to

                              combat HIV.


                              Many of the organisations formed to represent the victims are indignant at the

                              exorbitant prices charged for active HIV treatments that are used in the North

                              but are out of reach for those in the South. Demanding access to treatment for

                              everyone, and by every means, they denounce those who advocate "putting

                              everything into prevention", which they describe as "a self-interested policy

                              leading nowhere" (7). Amid all this argument, the job of the doctor in a rural

                              health care centre is far from easy.


                              He is aware that an epidemic cannot be controlled with drugs alone. He also

                              realises that if he does not provide treatment, he is foregoing the incentive for

                              people to come voluntarily for counselling and voluntary testing - the

                              mainspring for preventing them from becoming infected with HIV. Yet faced

                              with Aids, he cannot build on the experience he has gained in dealing with

                              tuberculosis, a curable disease with a well-codified scheme of treatment.


                              Making sure that anti-TB treatment is taken properly and regularly is an uphill

                              task. On the one hand the doctor has to gain the patient's confidence, and

                              convince him he will be cured in under a year if he is scrupulous in taking the

                              drugs as prescribed. Very many patients, however, feel better after a few

                              weeks and discontinue their treatment, thus putting those around them at risk.

                              On the other hand, the escalation in new cases makes running out of stock of

                              the drugs a nightmare for the health services (8).


                              The same kind of operational problems stand in the way of introducing

                              specific treatment for Aids. In the towns, only a few centres have staff trained

                              to deal with Aids patients and their family and social problems; and few have

                              the infrastructure needed to carry out the many tests needed for successfully

                              completing treatment that makes heavy demands and often has unpleasant

                              side-effects. Out in the countryside, these resources do not exist at all - a fact

                              that makes access to anti-HIV drugs premature anyway. Treatment that is not

                              followed properly or interrupted is of little benefit to the patient, and increases

                              the serious risk of resistant strains of the virus emerging. At present, the

                              priority in using antiretrovirals is to prevent mothers passing HIV on to their

                              newborn babies. The treatment is for a limited time, and costs no more than

                              the usual vaccinations.


                              One sign of hope is in the success achieved by bringing preventive action into

                              the programmes for caring for patients. Uganda, for instance, which opted for

                              providing information individually to its population and enjoyed firm support

                              from its head of state and the involvement of a number of ministries, has seen

                              the rate of new HIV infection drop by almost half within five years. Resisting

                              the siren calls of the short-term solution (the resort to antiretrovirals, which

                              mean treatment for life) (9), training health staff better in prevention work,

                              improving working facilities and reaching the whole of the population are

                              approaches all very much to the point.


                              In the public debate, the health professional - who needs to keep up the

                              community's confidence in the health service, imperfect as this may be - has

                              little room for manoeuvre.


                              The title for the 13th international conference on Aids held in July 2000 in

                              Durban was "Break the silence". Ambitious advice, to which some are still

                              immune. It is no longer enough to criticise the governments of the South for

                              their lack of commitment, and the UN agencies for being involved in words

                              rather than deeds. The deadly menace hanging over Asia and eastern Europe

                              can no longer be ignored in the way the frightening forecasts of the spread of

                              Aids in Africa were back in 1990.


                              Going beyond the individual cultural and scientific factors that hold back the

                              fight against Aids worldwide, it must be recognised - more forcefully than the

                              UN Security Council did on 20 January this year - that Aids is a symbol of

                              the economic imbalance ravaging our planet. It is a tragedy for all who are

                              denied their human rights and are thus peculiarly vulnerable to Aids infection.

                              It is a scandal because of the blinkered views of the financial powers in both

                              the North and the South (10).


                              There is one path to eradicating the causal agent, HIV - a vaccine. The

                              scientific challenge of producing it is, it seems, at last being met. Bringing it

                              into use, planned for 2007, will demand redoubled efforts in financing and in

                              education and information - and that means organising public debate.

                              Eliminating the predisposition to Aids, like that to other plagues, will come

                              through a long process of social change. And unless the silence that shrouds

                              the inequality of access to resources of every kind, including medicine, is

                              broken, this other and bigger challenge cannot be met.




                              * Dominique Frommel is a doctor, carrying out research at the French National Institute

                              for Health and Medical Research (Inserm).


                              (1) In southern Africa the incidence was over 20% in 1999.


                              (2) Epidemiology studies the occurrence, distribution and determining factors of health

                              and illness in populations. Its aim being to identify the causes of health problems,

                              modern epidemiology seeks to uncover the socio-economic obstacles to health. See

                              Didier Fassin, "Entre politiques du vivant et politiques de la vie. Pour une anthropologie

                              de la santé", Anthropologies et Sociétés, Quebec, January 2000.


                              (3) For an analysis of the situation in French-speaking Africa, see Marc-Eric Gruénais,

                              Karine Delaunay, Fred Eboko, Eric Gauvry, "Le sida en Afrique, un objet politique",

                              APAD Bulletin (Euro-African Association for the Anthropology of Social Change and

                              Development, D-55099 Mainz), 1999, vo. 17. See also Jean-Pierre Dozon and Didier

                              Fassin, "Raisons épidémiologiques et raisons d'État. Les enjeux sociopolitiques du sida

                              en Afrique", Sciences sociales et santé, February 1989.


                              (4) Josef Decosas, "Fighting Aids or responding to the epidemic: can public health find

                              its way", The Lancet, 7 May 1994, and Dave Haran, "Africa: do health reforms recognise

                              the challenge of HIV?", The Lancet, June 1997, supplement III.


                              (5) Basil Donovan, Michael W Ross, "Preventing Aids: determinants of sexual

                              behaviour", The Lancet, 27 May 2000.


                              (6) See Martine Bulard, "The apartheid of pharmacology", Le Monde diplomatique

                              English edition, January 2000. A further denial of appropriate health care comes through

                              the emigration to the industrialised countries of doctors trained in the countries of the



                              (7) "De quelle guerre parle-t-on?", Act Up-Paris, Le Monde, 29 January 2000.


                              (8) Every year some 8m new cases of TB are reported, and more than 2m patients die of

                              the disease.


                              (9) Gifts of drugs, in parcels with labels identifying the donors, are not a long-term



                              (10) In 1998 the African governments spent $6bn on buying arms and $15m on fighting

                              Aids. In the same year, official aid to anti-Aids programmes in the countries of the

                              South amounted to $160m, and the US National Institute of Health had allocated 10% of

                              its budget - $180m - to the vaccine project.


                                                      Translated by Derry Cook-Radmore



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